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Another Rheumy Update


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#1 kiwimum03

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Posted 18 December 2006 - 11:15 PM

Hi everyone,

well as I have posted before my rheumatologist trialled me on Prednisone to see if my joint problems were inflammatory since my bloods were normal again.
I phoned him to let him know how I went on the two week trial, and to also tell him what I hard time I had coming off it, due to the bad tapering of it.

He has now decided to start me on Plaquenil to help with my joint pain etc.
I am starting with 200mgs the first week, and then moving up to 400mgs.
I don't know much about it, but I have seen a few posts on it, so I am going to have to have a good read over the next few days.

He said it is good for Lupus and connective tissues type diseases. So I asked him if that is what he thought I had.
He didn't say much, just maybe.

He said he had seen alot of people with negative labs, who still have connective tissue disease, he just can't properly diagnose them, only treat the symptoms.
Well as long as he can make me feel better for the time being that is okay with me.

Of course I would love to know what is wrong with me officially, but he said that could take a while until it presents itself fully.

When we left his office, my husband turned to me and said, so, you have early stage Lupus............that was his take on the conversation, but I don't like to read into it too much. Although the rheumatologist did say Lupus like disease about 4 times.

Its soo frustrating, and I know after reading these posts that many of you have been down this path, and that helps me to be patient on a diagnosis.

So that is all for now I guess, I will trial the Plaquenil for 3 months (hopefully I tolerate it and don't get any side effects). and if all goes well I will continue on it.
he did say eventually it may help my fatigue..........###### I hope so.

That was one great thing about the Prednisone, for the first time in 2 years I wasn't tired, it made me realise just how tired I had been.
Now I am exhausted while my body gets used to not having Prednisone.
I have a rash on my face since last night, little tiny pimples, ugh!!!!!

Thanks for listening
Big hugs,
Irene

#2 janey

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Posted 19 December 2006 - 04:42 AM

Irene,
Thanks for the update. I'm sorry you still haven't received a diagnosis. I certainly know how frustrating that can be. UGH! Hopefully, the plaquenil will ease your joint pain and other symptoms, possibly even the fatigue. We'll keep our fingers crossed. If it doesn't help with the fatigue, you might consider talking to your doctor about low dose prednisone. I took 5 mg/day with no side effects for 3 years and that helped a lot with the fatigue. One thing to remember about drugs such as plaquenil, is that it might take a few weeks to a few months to actually notice the positive effects from it.

I find a couple of previous threads about plaquenil that might provide you with some information.
Plaquenil Side Effects
What is Plaquenil?

Please let us know how you handle the plaquenil.

Big Hugs,
Janey Willis
ISN Support Specialist
(Retired) ISN Assistant Webmaster
(Retired) ISN News Director
(Retired) ISN Technical Writer for Training Manuals
International Scleroderma Network (ISN)

#3 Heidi

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Posted 19 December 2006 - 06:25 AM

Hi Irene,

Thanks for letting us know what you learned at your last rheumatologist appointment. It sounds as if you are in the same conundrum I have been in for 5 years....something connective tissue is going on but not quite sure which way it will go. Some years it looks like Lupus and some like scleroderma. I too got to the point where I just focused on getting the symptoms treated and not worrying so much about a specific diagnosis. I have been taking Plaquenil for 3 or 4 years now (I can't remember which) and it has been a wonder drug for me. It works very gradually, so you won't notice any changes right away. It helped me a lot with pain and fatigue. I remember before I started taking it, I could barely stir the waffle batter I was so weak and tired. About 6 months later I realized that I was feeling so much better....but it was definitely GRADUAL!!

I sure hope it helps you as well. Please do keep us posted.

Warm wishes,
Heidi

#4 Sweet

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Posted 19 December 2006 - 11:42 AM

Hi Irene,

I think you will get really good results from the plaquenil. It can take several months to kick in and start working so don't get discouraged. I know that it has made a HUGE difference for me. I missed a couple of pills once and couldn't believe how quickly I felt horrible without it, so really be diligent in taking it.

It may take sometime before they can come up with a correct diagnosis, so try to be patient. I think we've all had to battle with that at one time or another.

Hang in there,
Warm and gentle hugs,

Pamela
ISN Support Specialist
International Scleroderma Network (ISN)

#5 kiwimum03

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Posted 19 December 2006 - 07:04 PM

Hi Janey, Heidi and Pam,

thanks so much for the replies!!! Its good to hear good things about the Plaquenil, I know it will take a while to work, but it sounds worth it in the end.
Janey, thanks for the links I will check them out when I get time.

Just curious, are the doses I am taking sound normal, 200mgs for one week and then 400mgs from then on? He said for my weight and height it was okay, so I guess it is.

Thanks again for your experience,
Big hugs,
Irene

#6 Shelley Ensz

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Posted 20 December 2006 - 02:11 AM

Hi Irene,

Yes, 200 to 400 is normal dosage for plaquenil. Also, taking the full dose at bedtime can help you sleep right on through any side effects you might have from it. And that is a good trick for many medications, but check with your doctor or pharmacist to see if that is okay in your particular case.

It's also year end, and time for everyone who is on more than one medication to review their prescribed and over-the-counter medications, vitamins and herbs (all of them) with their pharmacist. Make a list, and ask the pharmacist when a good time would be to review your medication program.

This can catch any hidden conflicts between meds, remind us of things we may have forgotten, such as that we need to take a certain med on an empty stomach (and not along with other meds); or that we cannot take calcium within 4 hours of a thyroid med, and so forth.

I always seem to learn something useful when reviewing things with my pharmacist. Once he pointed out that one of my blood pressure meds could be worsening reflux. By changing to another blood pressure medication, I was able to greatly reduce reliance on the meds for reflux. Another time he told me that generics were going to be released soon for a brand name I was on, and switching in a timely manner saved us a lot of money.

Many vitamins and herbs can interact with meds, so remember to include all the ones you take. For example, if I hadn't told my pharmacist I was taking calcium, he wouldn't have thought to warn me not to take it within 4 hours either side of my thyroid med (and so on).

My pharmacy is 24 hours, and they prefer medication review calls or general questions very late at night, when there is little store traffic. Calling for non-urgent information when they have a long line at the counter will not be welcomed, so asking them for the best time to do a non-emergency medication review really pays off. A good pharmacist on the healthcare team can be worth their weight in gold.
Warm Hugs,

Shelley Ensz
Founder and President
International Scleroderma Network (ISN)
Hotline and Donations: 1-800-564-7099

The most important thing in the world to know about scleroderma is sclero.org.

#7 Heidi

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Posted 20 December 2006 - 02:54 AM

Hi Irene,

I wanted to add something about the Plaquenil. I have been told (and it is written on my medication bottle) to always take it with food. I take mine at dinner time. If I do not eat with it, it leaves a very bitter taste in my mouth. Also, I am sure your rheumatologist told you, but once you start taking Plaquenil you need to have an eye examination every year because there is a very rare side effect with Plaquenil where it can damage your eyes.

Warm wishes,
Heidi

#8 Heidi

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Posted 20 December 2006 - 02:55 AM

Hi Shelley,

Thanks for that reminder! That is great advice! I had never thought of doing that, but it sounds like it would be well worth it.

Warm wishes,
Heidi

#9 Guest_Sherrill_*

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Posted 21 December 2006 - 10:14 AM

Hi Irene,

I'm a bit late coming in here, but I wanted to say I'd been thinking of you and wondering how you were getting on. Then I had a look at the Forum and there you were with an update!

I hope you do well on the Plaquenil, although as others have said you may have to be patient for results.

It's disappointing that you had a hard time with the Prednisone, mainly the tapering of it. However, at least he is trying you on something now which may turn out very helpful!

It's also disappointing that you still don't have a diagnosis, but I think everyone here has gone through that. Some took years, and some were a shorter time. My diagnosis took 9 months, but mainly I think because the sclero moved so very fast, and I had unmistakable symptoms in quite a short time. At first I was like many here....... the symptoms I had could have been caused by a number of diseases, but it didn't take long for that to alter in my case.

Good luck with the Plaquenil, and I hope your fatigue soon improves, as that is a symptom which can really drag you down!

Please keep us informed as to your progress.

#10 kiwimum03

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Posted 21 December 2006 - 01:10 PM

Thank you Shelley, Heidi and Sherrill for all your support and wonderful advice.

My Plaquenil says to take with food and to not have any antacids within 4 hours of taking it.
I have been taking my Plaquenil in the morning after breakfast, but I am thinking I may now switch to evening, and take my antacid in the morning, as I have been getting so much acid by midday.

I do hope I will get some relief from the Plaquenil, I know it will take time, in the meantime I am just taking ibuprofen and codine for the pain and swelling.
Unfortunately the fatigue is still a huge issue, but hopefully in time that will ease.

Something interesting, I went to see my hand therapist yesturday, it was only my second visit as I had been trying the braces out for a month and then report back to her.
And we were discussing my hands which have gotten quite bad in terms of pain and swelling, and also my handwriting had deteriated a little bit which I find quite annoying as I love doing calligraphy and take alot of pride with letter writing and cards.
She told me she said that although I have carpal tunnel problems, she didn't feel I had carpal tunnel syndrome and that she thought for sure I had a connective tissue problem and she did mention Scleroderma. She wasn't diagnosing or anything, but just giving me her opininon.
She gave me a lovely hand massage, and some more exercises to do as she said the mobility in my thumb and webbing between my finger span had decreased a little.
That kind of suprised me.
She also gave me some foam handles to put over my pens to help me write and grip better, it made such a difference!

I don't need to see her again, as she said I would be better of going to the hand therapist at the Rheumatology dept at the Hospital, that would be more specific to my hand issues. I didn't know they had a special hand dept for Rheumatology patients, so I will speak to my general practitioner about it if my hands get worse.

I have also noticed more red dots on my face, and I can't remember if Lupus patients get that as well or not, I really am not sure if I have Lupus, but have a strong feeling towards Scleroderma, I guess time will tell.

thank you all so much for your support,
Big hugs,
Irene

#11 Guest_Sherrill_*

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Posted 21 December 2006 - 01:36 PM

Hi Irene,

The red dots may be Telangiectasia
Have a look at this webpage from the ISN website, and see if anything seems similar.

I had problems like you with my hands, and my writing deteriorated. It was worst while my hands were so sore, but now, without the soreness, I can write reasonably well again, though the bent fingers took a bit of getting used to. Hopefully the Plaquenil will help you with this. When my hands were sore I even covered some sliding door handles with foam plastic as it hurt to open them as they were. I needed a sheepskin steering wheel cover to drive with too, as it also hurt too much to grip the bare steering wheel.

Don't forget what Heidi said to get your eyes tested while you're taking Plaquenil. If possible it's a good idea to have them tested just at the start of taking it, so they have a reference point to see if there is any deterioration in 6 months or a year, or longer. Of course everything will be closed for the holidays, but when you can get tested don't just go to an optometrist. You need an ophthalmologist with the special instruments he uses for this test.

I remember the first general practitioner I saw with the start of my troubles. She had done post graduate work in rheumatology, and she said half to herself: "I wonder if it's lupus", but of course it wasn't. However, I'm not saying this applies to you, but it seems a possibility the doctors often consider.

#12 kiwimum03

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Posted 21 December 2006 - 11:12 PM

Hi Sherrill,

the foam handles do definately help, such a simple little thing too!!

I did have my eyes tested about 3 months ago but that was just by the optometrist, can I get my general practitioner to send me to the Opthamologist or can I just book myself in?
(she did say at the time that the optic nerve behind my right eye was slightly enlarged but that it was probably due to my bloodpressure......)

The rheumatologist did say he might send me to one if my dry eyes got any worse to check for Sjogren's syndrome, but since I am not seeing the rheumatologist for another 3 months I guess he won't' be sending me unless I ring and say its gotten worse.
The Prednisone did seem to help the dryness funnily enough, one day I just noticed that my eyes hadn't been gritty for a couple of evenings.
Unfortunately it has started to come back, and moreso when I wake up in the night, it more like gravel than grit.

I am pretty sure I do have Telangiectasia and are getting more of them, AND my hair is thinning at the front...........ooooh I hate it, being 31 and starting to have a receeding hairline, I wish there was something to do to stop it!!!!!
Honestly, I feel like everyday the rate my hair is thinning just gets faster and faster.
I do have alot of fine hair, but I am starting to see my scalp more and more.
My mother just thinks I am being sensitive, but I showed my aunt today and she was quite taken aback by how noticable it was.

Does anyone else know what to do about thinning or shedding hair??

Okay now I am raving on, I know its cosmetic and I probably have greater things to worry about. Sorry for being so vain.

Big Hugs,
Irene

#13 Guest_Sherrill_*

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Posted 22 December 2006 - 10:36 AM

Hi Irene,

I am rather concerned about the problems you are having with your eyes. Not least the comment by the optometrist about the optic nerve. Anything wrong with the optic nerve is worth following up big time! I don't want to alarm you but I think you should see about it. On the ISN website you will find a page on Eye Involvement where you can read about various eye problems which may come from scleroderma.

I see an ophthalmologist regularly. I didn't need a referral to the one I see now. I just phoned and made an appointment. I *think* I gave you his name, but if not let me know if you'd like it to make an appointment. He would give you good advice on the dry eyes problems too, and if he is concerned about your optic nerve the clinic where he is also has a specialist in optic nerve problems. Are you trying the eye drops I told you about? You will need to use them every day, at least 4 times per day.

I know the feeling about hair loss! When I first became ill with the sclero, my hair started coming out. However after about 6 months it stopped and grew back again. Apparently this is not uncommon. Something which may help....... I don't know how you wear your hair, but if you have it pulled back from your face it can strain the hair roots while they are presently a bit fragile. It could help to change your hairstyle to have a fringe, or coming forward rather than back, until your hair settles down. And use a very mild shampoo plus a conditioner.

I've been having an issue this year with my hair falling out again. It started when I had high BP problems, and the doctors tried all sorts of different meds on me. One in particular, (which also did nothing for the BP), I suspect probably started my hair loss. Or it may have been a combination. Anyway, I started a regime of brushing my hair with a soft brush up to 100 times per day. (Grandma wasn't silly!) And also massaging my scalp very thoroughly every day. This seems to have helped a great deal, as I have lots of regrowth where the thin patches were appearing. I still have a few but they are improving. I always used to have very thick hair, and it's most upsetting to see it disappearing! So
I do understand. It's like one of the few decent things we have left, and that's going too!!

I can send you a PM about any point here you'd like to know more about.

#14 kiwimum03

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Posted 22 December 2006 - 09:19 PM

Hi Sherrill,

I haven't checked out the eye involvement link yet, but I will.
I too at the time thought that perhaps I should get my eyes checked further, but the optometrist said it was really only very mild, but to me, mild still means something.
There shouldn't be anything wrong really, so mild is worth another look, I think.
I will probably PM you for some more info soon.

I haven't used eye drops yet, my eyes did settle down a bit on the prednisone and have just started to flare up again, so I think I am probably going to have to go and get some eye drops this week, I don't want any damage happening.

My hair has been falling out on/off for 5 years. It started the moment I found out I was pregnant with my first son, so of course I guessed it was hormonal.
But it was falling out in huge amounts all through my pregnancy and after as well.
Then of course I got pregnant again when my son was only 3 months old, so more hair fell out.
It seems like it never stopped, but it must have at some stage as I still have hair!!!
Then of course when my second son was 13 months old I got pregnant again (yes, I know I like to have them close!!!) but in reality my hair was shedding whether I was pregnant or not.
I did at one stage notice some peach fuzz growing back at my hairline, but that has gone again.

Of course your body heals itself after a pregnancy, and you are supposed to lose hair afterwards, but I was losing it before, during and after.
My youngest is now 18 months old, and it seems like in the last 2 months the speed that it has been falling out is quite rapid (don't worry, I am not pregnant again, I made sure of that!!)

Its quite weird, all my major arthritic symptoms started in February this year, the month after I stopped breastfeeding, so sometimes I wonder if my hormones have triggered all of this.
My last pregnancy was not my best. I had pre-eclampsia (for the second time), low amniotic fluid, the baby wasn't growing, and raised liver enzymes which landed me in hospital 3 weeks before I delivered my son at 34weeks gestation.

Sometimes I wonder since this last pregnancy had been a doozy healthwise whether my body was just starting on the course it is now.....who knows??
I don't theorise too much because no-one knows really do they.

I hardly ever pull my hair back at all, mostly because I find it uncomfortable, but my hair is just below my shoulders and the kids pull on it sometimes, so I am thinking I will get it cut just above my shoulders in a bob cut, which it how I had it when I was younger. I have very fine hair, so hopefully by shortening it, it won't be so weighty, not that it really is anyway.

Regarding my eyes again. The main reason I went and got my eyes checked 3 months ago is because I kept getting blurry vision off an on which started about 6 months ago, and I have had 2 black floaters in my left eye for about 4 years, which sometimes are there all the time, other times I just don't notice them.

I am guessing now that the occassional blurryness, was the beginings of my dry eyes, as now I have dry eyes but hardly any blurryness.
the floaters have returned after being absent for a few weeks, they usually come back when I am tired or my BP is higher than usual.

okay I have written a novel, oops.

thanks for all the info and your concern, you have made me concerned enough to get my eyes checked again, which is a good thing.

Big hugs,
irene

#15 nan

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Posted 24 December 2006 - 01:31 PM

Irene,
You sound a lot like me. I was diagnosed with fibromyalgia, Sjogren's, GERD, and Raynaud's in 1998. I had a positive ANA and was weakly positive for Sjoren's. Another blood test in 2003 showed the same. In 2004 I found out that I have Gastric Antral Vascular Ectasia which is usually associated with scleroderma. Last Feb my bloodwork was redone and everything was within normal range. My rheumatologist told me the only way to get a definite diagnosis was to go to Cleveland or Hopkins. I know that he can only treat the symptons, but my husband and I really want to know what we're dealing with. THE FATIGUE IS HORRIBLE! I too take Plaquenil. I didn't realize that you're not supposed to take with an antacid. Whoops! I went off Plaquenil for a month this past summer because my rheumatologist said that I could go off it if I wanted to since bloodwork was normal. I was in horrible pain! I am not going off it again. It has really helped me and I hope that it will help you too. It does take a while to get into your system.
I am going to Hopkins on this Wed. I will post how it goes and then maybe you can go to Hopkins too if I find something out.
Take Care!
Nan

#16 kiwimum03

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Posted 25 December 2006 - 10:45 PM

Hi Nan,

I am so happy you had good results with the Plaquenil. I really hope that it will work for me.
I can't stand the fatigue, everyday it feels like it is getting worse, and my joints are very sore after coming off the Prednisone.

I live in New Zealand, so I won't be able to go to the good specialists that you all get to go to in the States.
I do have a good rheumatologist, hopefully in time we can figure out what is going on with me.

Good luck for Wednesday!!
Hugs,
Irene